PB1936: IDENTIFYING INEQUITIES IN SUPPORT - GLOBAL SURVEY OF PATIENT ORGANISATIONS DELIVERING SUPPORT SERVICES FOR CLL PATIENTS
Authors: Deborah Baker, Nick York, Kathryn Huntley, Michael Rynne, Nicole Schroeter, Pierre Aumont, Brian Koffman, Felice Bombaci, Jennie Bradley, Lynsey Fenwick, Anna Schuh, Alina S. Gerrie, Norah O. Akinola, Yervand Hakobyan, Nicole Lamanna, Versha Banerji, Renata Walewska, Paolo Ghia
Journal: HemaSphere (2023)

Topic: 6. Chronic lymphocytic leukemia and related disorders - Clinical Background: The CLL Advocates Network (CLLAN), a global network of patient advocacy organisations who support those affected by chronic lymphocytic leukemia (CLL), conducted a survey to understand at a global level the provision of support services for patients with CLL, access to healthcare prior to COVID-19 pandemic and the impact of COVID-19 on delivery of CLL treatment and care. Aims: The aim was to collect support service and organisational data to understand and analyse the services and support offered to patients worldwide by CLL organisations. Through service and geographical mapping, identification of strategic priorities to address inequities in lived experience and access to care can be developed. Methods: Desktop research identified 158 patient advocacy organisations in 69 countries that focused specifically on services to support areas of CLL, blood cancer or all cancers. They were invited to take part in an online survey between 6 May and 2 August 2021. The 63-question survey was available in 7 languages. Results: 57 respondents represented patient advocacy organisations in 40 countries. Countries were segmented into low-and-middle-income countries (LMIC) and high-income countries (HIC). LMIC include those classified as •Least developed countries or •Low-income countries or •Lower middle-income countries and territories or •Upper middle-income countries and territories by the Organisation for Economic Co-operation and Development (OECD). Image 1:Overall responses reported most frequent barriers to providing services were lack of human resources/ staff/ volunteers (74% for both HIC and LMIC), lack of financial resources (52% HIC vs. 89% LMIC), lack of time (48% HIC vs. 32% LMIC) and lack of skills and knowledge (19% HIC vs. 37% LMIC). Questions provided insight into the leadership and opportunities that CLLAN could provide to support organisations in their service delivery. While best practice sharing ranked highest for both LMIC (100%) and HIC (83%), overall LMIC ranked the support from CLLAN in higher value to support their practice. This demonstrates a strong demand in LMIC to build their capacity to support their patients with CLL. Other areas that ranked highly included training/courses (e.g., online learning modules) for organisation staff or volunteers with 95% for LMIC and 59% for HIC. Face to face capacity building events/ learning events such as conferences and virtual conferences for capacity building, digital learning and networking were ranked highly by both groups (89% LMIC vs. 64% HIC). Summary/Conclusion: This survey has demonstrated a high level of interest and engagement in networked activities. It has also highlighted the variety of services that organisations are offering to patients and education about CLL more widely. The survey results have identified gaps in service provision and how this differs across organisations and between countries across the globe. Responses provided to this survey show a deficit in services particularly for patients in LMIC. Improved collaboration and communication between all those involved in CLL will improve outcomes for all patients regardless of their geographical location. CLLAN can help support, promote and facilitate this, continuing to increase the offering of specific best practice sharing and capacity building resources. CLLAN and its member organisations need to continue to work in collaboration with healthcare, research and policy makers across the globe to improve the outcomes for all patients with CLL regardless of their location and socioeconomic status. Keywords: Chronic lymphocytic leukemia